GenomeConnect: The ClinGen Patient Registry

Patients can share their health and genetic information through the ClinGen patient registry, GenomeConnect.  

GenomeConnect is a registry used to connect people who are interested in sharing de-identified genetic and health information to improve the understanding of genetics and health. GenomeConnect is a not-for-profit project developed by the Clinical Genome (ClinGen) Resource to engage patients as partners in data sharing efforts. GenomeConnect is hosted by PatientCrossroads, a secure online registry system.

Get Started

Learn what participation in GenomeConnect involves.

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Frequently Asked Questions

Interested in learning more about GenomeConnect and how it works? 

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Sample Consent and Assent Form

Want to review the consent and assent form before signing up?  Download here.

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Sample Health Survey

Want to review the health survey before signing up? Download here.

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Recruitment Materials

Help us spread the word about GenomeConnect.

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Newsletters

Stay up to date on GenomeConnect news.

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Posters and Presentations

Download posters presented about GenomeConnect.

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Staff

Learn more about the people who run GenomeConnect.

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How to Connect with Participants or Request More Data

Learn how to request more information, to connect with participants and how to cite GenomeConnect in your research. 

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Data Sharing to Date